Kidney patient struggles with impatience

Every Monday, Wednesday and Friday for nearly four hours a day, Carmen Morales kills time to save her life.

Rebecca Hyman

Every Monday, Wednesday and Friday for nearly four hours a day, Carmen Morales kills time to save her life.

The single mom from Taunton, Mass., is one of 350,000 dialysis patients nationwide.

She has good days and bad days. On her bad days, she feels trapped.

She tries to pass the time reading magazines and doing crossword puzzles, but there she is, a tube sticking out of her arm, the other end connected to a large machine that is fixed in place. It’s not like those portable intravenous units that follow a patient around. As long as she’s hooked up, Morales is tethered to her chair.

So, she waits as the clock ticks.

She tries not to focus on the 300 cubic centimeters of her own blood outside her body at any one time as it circulates through the machine and its tubing.

In one sense, something extraordinary is taking place, a highly sophisticated medical procedure. In another, it’s as mind-numbing as watching laundry spin in a drier.

“With me, it’s anxiety. By the end, I get to the point where I just want out,” Morales said.

On her good days, she feels lucky.

Until three or four decades ago, end-stage renal disease was a death sentence. That was before dialysis and kidney transplants.

When the kidneys failed, there was no backup system, like an airplane with just one engine.

“If we didn’t have dialysis, I would be dead,” Morales said.

A person can’t live without the filtering function the kidneys perform.

But the filtering doesn’t need to take place round-the-clock, unlike the vital work of the heart and lungs. That means dialysis machines, which are basically artificial kidneys, can do their job on a part-time basis.

“The science has developed to the point where people can come in, get treatment and go home shift after shift, day after day, year after year with so few complications,” said Dr. Allan Lauer, director of the Taunton Kidney Center, where Morales is a patient.

“It’s amazing.”

Blindsided

Morales, 49, first learned she had kidney disease 19 years ago when she was pregnant with her daughter Alexandra.

But she felt fine and didn’t think much of it. Until 2004.

That’s when her doctor dropped the bombshell: Her illness had progressed to the point her kidneys could shut down at any time and she might suddenly need dialysis to save her life.

In 2005, Morales, whose daughter is her only child, was the community coordinator for the WIC program at Citizens for Citizens. She was on a waiting list for a new kidney but had not yet started dialysis and was hoping it would never come to that.

She is still waiting for a kidney. A potential donor has come forward but is still undergoing testing. Morales is afraid to get her hopes up, she said. She has had some promising prospects fall through in the past.

In the meantime, she was unable to stave off dialysis. Morales started the treatment on July 11, 2006.

She does not need to look up the date. Dialysis not only saved her life. It changed her life.

She is no longer able to work due to the demands of the treatment coupled with the debilitating effects of her illness.

Early on, she asked one of her fellow patients, a young woman who’s been on dialysis about 10 years, “How do you cope with this?”

“She said, ‘If you want to live, you just do,’” Morales recalled.

“Now that I’ve started dialysis, I see she’s right.”

A couple of years ago, Morales never imagined she’d have ribbons of scars on her right arm from dialysis needles, artificial grafts and surgeries.

But she also never imagined she’d find a reserve of strength and humor to help her through.

They are the scars of a warrior.

When one of her sisters found out about her illness, she asked, “Why you?” Morales said her siblings always seemed to view her as the fragile one.

“They definitely can’t say that now,” Morales said.

Tough medicine

After her first dialysis treatment, Morales already felt better. The toxins were leaving her system. She felt healthier, less worn out.

So, she knows she needs it. But it hasn’t been easy.

In addition to the anxiety and boredom, there is the thorny issue of the need for repeated access to her blood system.

The human body resists all that poking and prodding.

In the past few months alone, Morales underwent five procedures to deal with that challenge.

The artificial graft of synthetic tubing in her forearm had to be declotted twice.

The day after Thanksgiving, she was in Massachusetts General Hospital to have the graft repaired. Then in December, doctors inserted a catheter in her chest as a temporary access point.

The catheter was no fun at all, she said. She couldn’t get it wet, so regular showers were out of the question. It was a relief to get back to the needles. And that’s saying a lot for someone who’s had a lifelong fear of sharp, shiny objects.

Finally, in February, her doctors created a new access point in her upper arm using her own vein. So far, that seems to be working.

Then there are the dietary restrictions. And let’s not forget all the pills she is required to take. Sometimes, she feels sore. Sometimes, she feels nauseous.

Morales would like to be the kind of person who never gets discouraged, she said. Instead, she’s the kind of person who has highs and lows but just keeps picking herself back up and moving forward.

She admits there have been days when she couldn’t make herself sit through three hours and 45 minutes of dialysis.

One time, when she had a bad cold, she signed herself out early. She just wanted out.

But usually, she’s able to muster the grit to stick it out

“I think it’s like this for a lot of people on dialysis. We’re thankful there’s a treatment to keep us alive. But it’s just so draining. I feel all these things are taking over my body,” she said.

One for all

Dialysis has a built-in support group because the patients receive their treatment together.

At the Taunton Kidney Center, they sit at their stations in a circle in a big room with a nurses station in the center. The patients go in shifts, almost as if it were a part-time job.

Morales said it helps to know she’s not alone.

Many dialysis patients are older, at least in their 60s. Morales is the youngest on her shift, which starts at 11:30 a.m.

She said it’s hard to get to know the other patients, since they can’t get up and walk around.

But she’s very fond of several of them.

Stanley Szteliga, an 87-year-old incurable optimist, is an inspiration, she said.

And then there’s her “dialysis buddy,” a married father of two.

“He’s wicked funny,” she said.

They sit next to each other when they can, so they can chat and cheer each other on.

“It makes the time go by quicker. You’re talking, so you’re not focusing on the dialysis,” she said.

Holding on

Morales’ sisters and mother all wanted to donate a kidney to her, but they have high blood pressure and are not eligible. High blood pressure and diabetes, two of the main risk factors for renal disease, run in her family.

Alexandra also wanted to be tested for compatibility, but Morales was against it. She reacted with the protective instincts of a mother. One day Alexandra might face a similar condition.

Alexandra loves Broadway and was accepted at New York University but decided to go to the University of Massachusetts at Dartmouth, where she is a freshman, to stay closer to her mom.

When Morales feels herself slipping into a dark place, she thinks of her daughter.

“It keeps me going. To me, she’s still my baby. I’m the only parent involved in her life,” Morales said.

Morales has always done social work but isn’t sure she’ll return to it when she’s well enough to work.

“I still don’t know what I want to do when I grow up,” Morales said.

She tries to enjoy her life but often feels like it’s on hold.

“I want to travel and live life differently. I still don’t feel like I’m living life to the full,” she said.

She’d like to spread the word about the importance of checking off that box to become an organ donor. She wasn’t always one herself.

“People aren’t aware of how much difference they can make,” she said.

Taunton Call

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